Author: katherineambos

Looking for a one of a kind Christmas gift for all the Leafs fans in your life…support Madison’s life changing surgery and purchase a ticket for a fantastic private party at the home of The Ultimate Leafs Fan!

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Madison got great news today that she was approved for All Access Funding from Three To Be! They are sponsoring the purchase of equipment to help kids with neurological disorders be included in outdoor activity with their family and friends. Madison’s funding will be going towards an adaptive bike! It will be great for her to learn on in the spring and as a bonus it will be excellent to have as part of her rehab process after surgery. She will be getting a foot propelled therapeutic AmTryke!

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Madison had a great day! She spent her afternoon at March of Dimes participating in different Christmas activities for her last class of the session. 

Madison also had her last night of swimming with Ryan and Jessica until the new year. She did some water walking and floats with her life jacket. She was especially thrilled with a gift that Jessica gave her- a hand made bracelet! 

Jack also had a great day helping Mommy finish up the Christmas shopping and then kept Nana and Papa busy while Madi was at her swim lesson 

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We received great news today. After MANY appointments, phone calls, paperwork, running around – we were able to secure an appointment with a peadiatric neurosurgeon out of McMaster Hospital in Hamilton. Our OHIP forms were returned stating that they will not place decision on approval or denial for coverage of the surgery until receiving forms signed by a neurosurgeon. Madison will be going to receive a full assessment and then we will discuss her surgery planned with Dr Park in May and ask for the out of country OHIP forms to be signed. Cross your fingers and your toes!

Jack had a great morning with his buddy Owen playing. They are so funny together, playing and trying to “talk” to one another. 

Madison had a great afternoon with Grandma and Grandpa. Her favourite part was decorating gingerbread and tasting everything. 

Madison was thrilled to use her new walker at ballet class tonight. Her old walker didn’t turn well as it had to be lifted. Her new walkers front swivel wheels made it super easy for her to spin around with her friends in class. For those of you interested in ordering clothing from the “In My Own Skin” campaign for Madison’s surgery – being run by one of the studio’s teachers, you can email her at:

mohoganyxo@gmail.com

Jack had a great check in a Grandview today. His neck rotation continues to improve and he is more consistently holding his head in line with his body when standing and sitting. When looking over his right shoulder, he continues to drop his chin down or tip his head back and is not consistently in line, so we have some homework to do to help him achieve this. He is also being measured again next week to see if his head shape is continuing to improve from the use of his helmet while sleeping. 

Need some help buying the perfect gift this holiday season… Please consider donating to Madison’s surgery as a gift to that special someone. Every donation made as a holiday gift will receive this card from Madison to give with the donation. Thank you for your support!

Madison’s Life Changing Surgery Go Fund Me Link

Madison and Jack continued to get into the holiday spirit tonight with Nana & Papa while Mommy was coaching. Madison loved dancing to Christmas music and even stood by herself clapping and singing!

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Here is a photo that a fellow SDR Mommy shared. It’s beautiful and shows the possibilities for Madison.

Madison and Jack had a magical afternoon visiting with Santa, watching a magic show, decorating gingerbread and seeing Santa’s reindeer thanks to their Secret Santa! Lunch was yummy and dessert was even better! 

Madison and Jack finished their day with decorating their tree! 

Madison and Jack had a blast at Nate’s 2nd Birthday party today. The play place was so much fun for the kids, fully accessible, safe and the perfect size and interest level for Madison. She loved it and there was something for every age which was great! Mommy and Daddy also learned that AFO’s and twirly slides don’t work well together… Daddy to the rescue! The Elmo cake was a big hit and Madison LOVED playing with the ball canyon. Happy Birthday Nate! Thanks for a great party!

When Madison got home she had a wonderful surprise. Her friends at Million Dollar Smiles dropped by to deliver her a Christmas Bear and Toys R Us gift card. They even brought a smaller bear for Jack. Madison was thrilled! The organizations mission is to try and put a smile on children’s faces who face challenges in their everyday lives. Thank you Million Dollar Smiles!

Madi and Jack had a great time with Stephanie at Variety Village today. Madi did her physio in the new kids gym! She practiced her walking, stairs, and did some core and strengthening in the ball pit and on the swing. Thanks Variety for providing a new space for Madi and her little friends to play and work on what they need.

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https://m.youtube.com/watch?v=NtDC0_zHcH8&feature=youtu.be

We continue to be blown away from all of the support Madison has received for her life changing surgery in May. 

We were blessed three times today:

1) Nathan’s Birthday

Madison enjoyed celebrating Nate’s 2nd Birthday by going for dinner with family and spending time with her favourite partner in crime. She made him a blue gingerbread man and loved seeing him on his special day. Thank you Nana & Papa for taking Madi and Jack to celebrate!

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2) High School Donation

Today we received a donation for Madison’s surgery from Blessed Cardinal Newman High School where Mommy went to school. The students and teachers at the school had heard about Madison and her surgery and had a civies day and collected money from the students for Madison. This was an incredible surprise and such a special moment to learn of their caring initiative towards their school alum. Thank you!!!!

3) In My Own Skin

Another incredible surprise came our way today:

“Hello Ambos family! My name is Mohogany, I am Suzie’s daughter and I am also one of the teachers at Denise Lester Dance Academy. My mom had mentioned to you that I had made a clothing line in order to help raise money for Madisons surgery! I have created a Facebook and instagram page for my line and just wanted to reach out and share it with you so you know what it is! I absolutely fell involve with your daughter the day i saw her. Growing up I had a cousin who also had cerebral palsy and i spent every waking day caring for her. Sadly she passed away a few years ago. So as soon as I saw Madi i just had tears in my eyes and my heart just felt so full. Such a beautiful spirit and so determined! I love how nothing stops her from doing what makes her happy and at such a young age. When my mom told me about her surgery I just knew i had to find a way to help! So of course i made the clothing line! I hope to raise at least $3000 and give it to you guys to help as much as i can! The Facebook page is called In My Own Skin, and the instagram is @inmyownskinxo ! i hope you don’t mind that i shared your blogs and Everything on Madi’s story. I just really wanted to help! I wish you guys the best of luck with everything! 

Sending all my best wishes,

Mohogany Brown”

This beautiful email came to us from the daughter of Madison’s ballet teacher. She wants to help spread awareness and teach young girls about self love by initiating a campaign and clothing line entitled: “In My Own Skin” and will donate towards Madison’s surgery!

We have already placed an order for a pink TShirt and hat for Madison. Check out this info to support this amazing initiative- thank you so much Mohogany!

https://www.facebook.com/inmyownskinxo/

Today was a day of highs and lows.

Highs:

Madi had an awesome morning at school! She showed off her new walker and used her big loud voice all morning.

While Madi was at school, Mommy was at the pool for a special spot on the news to advocate for synchronized swimming for athletes with a disability. It was wonderful to have swimmers from different clubs in the GTA join together to  showcase the sport they love. 

After school, Madi worked hard and had fun at March of Dimes. She practiced using her canes, loved the theme of the day- the very hungry caterpillar, learned about the letter ‘h’ and playing with pom poms. 

Madison really enjoyed using her canes today at MOD that she wanted to practice with them at home before bedtime.

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Low:

OHIP application status

After being denied a signature from a neurosurgeon at Bloorview and being denied a signature from a developmental peadiatrician on out of country OHIP application forms for funding, we were advised to collect letters of support from all the therapists, medical staff and professionals who work with Madison and to send in those letters with the forms signed from her peadiatrician. We received a letter from OHIP stating:

Back to square one. We now wait to see if we can get in with a neurosurgeon in Hamilton at McMaster. 

Madison had a great morning at school. She was so happy to see her therapist Suzzane in class who took her for some physio in the gym. They practiced stairs, treadmill walking and balancing on the physio ball.

After school Madison and Jack had some lunch and a nice visit with Pam and Medford while Mommy caught up on some of Madison’s various paperwork. They played with all the Christmas decor around the house, animal dominoes and animal snap! Madison told Mommy her favourite part of the visit was laughing at dancing Santa on the door.

Today was also a great day for deliveries! Madison received her letter from Santa and her new walker today! 

She was thrilled to hear that Santa got her letter, that he liked the sparkles and stickers she put on her letter and that he would be going to her house very soon.

Madison was also thrilled to have her new walker delivered. She loves the front swivel wheels and commented right away that it doesn’t squeak or tip back like her other one did. She also said it moves like a car and proceeded to chase Jack around the house trying to run him over.

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Madison’s fantastic day ended with a family get together at Janine and Lou’s house to plan for her upcoming surgery. Around 25 people gathered to share fundraising ideas, discuss help needed while gone, things needing to be looked into such as finding a hotel, renting baby gear, appointments and life after surgery etc. We are so grateful to have such amazing family and friends who would do anything for Madison and support us through this all.